Hi all
I have finally got an appointment for Botox injections! I have had 9 rounds of GONI and initially these worked and were amazing so hoping the Botox will help too.
Can anyone tell me how they felt immediately following the injections please?
Thank you
Hi shello28..i had this twice and had no affects at all. Weren't painful i had 33 injections on each occasion, didn't help or change my migraines at all but 2 x GON done nothing for me either and did help you so you should get great results from botox 😁 good luck x
Hello shello28,
I'm onto my 5th round with a control gap in the middle. The first set made me much worse and gave me really bad neck pain. However the second round gave me a great improvement and because of the neck pain they spread them out more near my neck. In the control I was worse again but in the last 2 rounds I have been better with no neck pain. So all in all a varied response but largely positive. Its seems its always 33 injections which if you are used to migraine pain is insignificant. Plus it takes the frowning wrinkles I have on my forehead away which is a bonus!
Hope it goes well for you, you have to have 2 rounds anyway because that is the minimum they think is effective.
xxCat
How do you get referred for this? I've never been offered any sort of injections. In fact, one GP laughed when I suggested nerve involvement.
FRODO, If a GP laughed at you about nerve involvement from migraine, that Doctor is grossly uninformed as a GP and insensitive to you. I went to the top neurologist in our town, a world class migraine expert, who travels world wide to lecture and consult; migraineurs wait months to see him. When he heard how informed I was from years of experience he said we were really learning from each other.
Dump that GP and find someone who will respect and work with you as a team, respecting your needs and not an arrogant Directorial physician. Check for neurologists in your area-- they are the ones with Botox. The actual treatment is not fun but the results for me lasted 3 months-- pain free and triptan free. After that the window of sanity, pain free, kept shrinking until after 18 months I had a migraine every day that only responded to multiple triptans. For some Botox works longer and others, not at all. My experience seemed to be in the middle.
Fo take into consideration it has been found that Botox does not "stay locally" at the site of injection-- It travels through the blood stream with possible side effects of its initial intent.
Thanks Margauxjean - it's helpful to hear a sane, supportive response from someone well informed.
Alas - I did see a neurologist and their response was "It is migraine, take painkillers (triptans)". What a waste of an appointment.
I have also changed to a different GP practice, with far better GPs who take their time and listen.
Thanks for the info about Botox moving round the body - that actually puts me off having it. I'm still interested in the GON block but doubt I'll ever get it.
I can't believe your neuro did you like that! I see a neuro that specializes in headaches. I was referred by my psychiatrist and thankfully because the neuro I had at the time was like that too. Just threw midrin, amitryptiline, inderal, and norco at me and said come back in six months. I'm bipolar so it is a bit tricky to work with my current meds. Sorry you had that experience. Have you tried to find a headache specialist?
Hi Margauxjean, Re: Botox injections for migraines. I see your last post was 6 months ago so not sure if you will pick this up. I have just been offered Botox by a neurologist (I'm in the UK) but I'm very concerned as I am so allergic/intolerant to so many substances in medications and food etc. and really sensitive to just about everything. I am worried if I have the injections and they don't suit me whatever will I do? I react badly to just about everything but the Doctor's don't really take this into account.
Do I understand that you had the Botox and were pain free many months and then the migraines came back every day after that and you had to take more triptans than usual? This is what I am worried about as I am taking quite a lot now. I had 131 migraines in the last year so spending so much time already struggling from day to day just surviving. I also note you said that Botox does not "stay locally" at the site of the injections and travels through the blood stream with possible side effects.
I also have an IBS/Diverticultis problem and struggling with terrible diahorrea as well and very concerned that Botox could exacerbate this problem too. Any thoughts or comments would be greatly appreciated if you find this message. How are you getting on now, are you feeling any better or have you just gone back to how you were before the Botox? Many thanks if you pick this up.
Dear Pump321,
The agony of all this is frightening. My experience with Botix was this: I got injections, probably about 40 each session--I laid there crying while the doctor's wife/ assistant held my hand. The first round was a miracle-- I had no migraine for 3 months in the summer. (Heat & sun bring them on for me always). Then they started to return so I had another round-- 2 months of no pain. Third round lasted a month then the headaches would not stop. I took Imitrex daily twice or 3x @ day to get through the month. I refused Botox any more but my neurologist is a Botox specialist-- He is known for it and he keeps trying to get me to do it again. He says I am the only patient of his out of literally 100's that does not respond to Botox. How could that be? People have posted on here experiencing no luck with it.
So now I have become dependent on Naratriptan-/ I take one each night and occasionally two to be free of debilitating migraine MOST of the time. Sometimes with flu or a random freak thing I get a headache that won't respond to anything that lasts two days and keeps returning. I am terrified because now I have OnamaCare sponsored health insurance ( I live in the U. S), and the insurance refused to pay for the 30 to 60 Naratriptan I need to survive per month. Seriously, when I run out of back stock my headache will never go away, I am pondering euthanizing with great fear and remorse but with no apparent option for help. What will happen? I don't know. I have tried many if not all the preventatives to no avail and cannot take antidepressants for migraine as they cause bone loss and I have severe osteoporosis.
I read a small article in the paper just as I was in that horrible phase when the Botox stopped working claiming the chemical does spread in the bloodstream after all, and over time can cause paralysis, etc., the side effects it has when used in chemical warfare. So that's why I had a double reason not to use it anymore. I have no idea if Botox can exacerbate IBS-- have you Googled that? I too have painful tummy problems and have become strictly Gluten Free which helps 90%. Also taking good probiotics helps.
I also eat no refined sugar ever or agave. A bit of pure maple syrup or honey now and then is ok but sugar is migraine good. I read all package contents carefully.
If I can be of any help at all please let me know. Maybe others on this site have a longer success record with Botox and can encourage you to try it. This curse of pain we've got as migraineurs is just unfathomable. With warm wishes for healing, Margaux
Dear Margaux, Thank you so very much for your reply, it was heartbreaking to read and reduced me to tears to think of all you have been through, and are still going through, so much suffering, how horrendous for you. I felt so emotional just reading what you have experienced (and I'm not one easily moved to tears) but your story is truly heartwrenching. It must have been soul destroying to go through so much botox with good results and then to be plunged back into never ending uncontrollable migraines, that's what I am frightened of I think.
It was so kind of you to share your experience with me. I am at a loss for words to be honest, I know and can feel your desperation as I have also thought of euthanasia in my deepest and darkest hours. I am a very strong person but there is a limit to just how much suffering a person can tolerate however tough and resilient. It is a pain that is indiscribable and only chronic sufferers like ourselves can truly identify with.
I am dependent on Zolmitriptan at present but have tried most of the other triptans that suit me. Like you, I am taking more and more as time goes by which is a concern but I cannot take preventatives either and antidresspants don't suit me. I am left with no other choices. I have tried acupuncture and reflexology, indian head massage, herbal teas - you name it I've tried it and spent a fortune.
I am sure there will be repercussions in years to come with all this Botox treatment, we just don't know the true facts at the moment. I think stomach problems and migraine go hand in hand or perhaps the triptans are the cause, we may never know.
Like you, I wonder what the future holds. Just surviving from day to day like this is no life for sure. I have come to the stage where I do not admit to the world how bad things are as people think I must be some kind of hypochrondriac. If I can hide my suffering I do but it's difficult as my social life is non existent now and my husband goes to most things on his own these days. I just crawl into bed until I can function again but it's getting harder and harder to try and remain cheerful with the family when I am suffering so and it just goes on and on.
I want to say to you not to even think about euthanasia as it is a horrendous thing to contemplate but it is also a natural response when things are so bleak and you cannot see a way through it all. I hope and pray Margaux, that it does not come to this for either of us. There are new medications/injections that are on the horizon I understand, so hang in there. We have a Professor Peter Goadsby here in England who is hopeful that there are exciting new medications coming along so I am living in hope that we may find something to help us with our suffering.
I could go on but must stop now. I thank you so much for sharing your story with me and useful information. You are the only person I have found who has experienced the same problems as me with migraine and that I can identify with. Take care Margaux and please let me know how you are getting along.
With my best wishes and grateful thanks
Marian
That's great you will be trying Botox. I had 4 rounds of this- first 2 helped a little but last 2 nothing . Think it also depends on skill of the Person doing it. Can't lie it did hurt but nothing like bad migraine . Had 38 injections. Had more success with GON but only lasts 2 weeks. Best of luck . Ps felt fine afterwards !!
Felt fine after Botox, but as others had no benefit from it, still would take anything that is offered x
Try the daith piercing first. Some have amazing results with it. Personally mine are less frequent and less severe since having it done.
I agree with you on this. ..the daith piercing is less expensive than botox for sure. Personally, it hasn't worked for me and I got mine about a month ago. I got it on left side which is where my headaches are but no relief as of yet. It's cute tho and I paid 50 bucks so I'm leaving it. My neuro is great and chuckled a lil when I showed him but he understands the desperation of a migraine victim and what lengths we will go to to get our lives back. He is "the" headache guy here in indy and I trust him completely.
I just had my first round three days ago. My neuro starts with 20 the first round and then does more the second round. The injections really just stung a little going in. It's a super small needle. I would say it would be like a small sweat bee sting rather that a regular bee sting. If that makes any sense. The more relaxed your head/facial muscles are while being injected the less it will hurt. I had to stay for 15 minutes after it was done to make sure I didn't have an allergic reaction but I felt fine. I was coming off a terrible migraine that morning. I still have been having at least 2 migraines a day since but am hoping for relief soon. My goal is to be able to garden and get my toddler out to playgrounds and pools this summer. The heat and humidity are huge triggers. My next appointment is in June so im praying for this to work.
Thankyou for your reply. It has been nearly 3 weeks since i had my Botox injections. I found them to be mildly uncomfortable around the front and sides and very painful at the back of my head and neck. I also found the GON injections very painful too. All seemed to be ok following the injections - just sore and a bit uncomfortable, however about 6 days after i became quite poorly - painful and stiff neck. disorientated and dizzy and VERY tired ( had to take a few days off work ). I did a lot of reading up on side effects and these all seemed to be on the list. Had a constant headache too. BUT..... the last two days i have felt brilliant!!! Haven't actually felt like this in such a long time - years in fact! I am optimistic and remain positive that it is the effects of the Botox! I haven't got a migraine, don't feel sick. am not in a daze, have been able to string a sentence together, have been able to concentrate and remembered conversations from the last few hours!
Good luck to you all!
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